As you know, I have a new PM. He is an anestegiologist (sp?) and he is very willing to research rsd procedures and treatments.

I have been given three epidurals (right above my tail-bone) with Lidocane. I have had great temperature increase and blood-flow improvement.

Today I went in for my usual epidural and he added Ketamine to the mix. WAHOO! I feel great! I do hurt, like always, I always feel like I've been run over by a truck or bus the day of and after an injection. BUT... I DON'T HURT!

OMG! I don't hurt! Still on my meds, doesn't want me to stop when not needed but WTH! I don't hurt.

So, pardon me friends if I ignore you tonight. (I am not. Just trying to enjoy this wonderful relief!) I am going to NOT HURT for an evening and enjoy my family. Flippin' awesome!

I feel like I have found a very special secret!

Hope everyone has a pain-free night.

I'm happy for you Kim....I hope it continues for a long time and you feel great always. Good luck and keep safe....mellowguy

Glad you are getting relief !!! Enjoy and hope it stays around for a while or maybe longer ! Hope you are having a good time with family.....Take care !

Kim~

Wonderful news...Try to stretch it out as long as possible and please..relax and enjoy your family....Bless you my friend..We'll take whatever we can get huh?!!!!

Hugz, Kathy

That is awesome news! I sincerely hope your relief continues...

When I first started ketamine infusions, I went down on my meds because I also noticed such a change in my pain. And I made myself horribly sick. I had been on Fentanyl for 8 months, and I started to titrate down (by cutting my patches in half and stretching out the time between changing them). My stomach revolted, and it just messed me up bigtime. It was hard to tell what was making me sick - the ketamine infusions or the changes in my meds. I had NO CLUE - my sister, who is a nurse, figured it out and I ended up going back on my meds for a few weeks until I could get a script for lower doses of Fentanyl and then Suboxone.

So I would recommend that you listen to your doc and stay on your meds, until you can develop a plan to go off of them with his assistance (perhaps using something to offset the effect of the withdrawal, if you have any).

Good luck to you!! Are you still in line for an SCS at John Hopkins?

XOXOX Sandy

Enjoy the relief !

Nice to hear something happy. I hope it continues and hope you enjoy the better times.

Hi Sandy.

Thanks for the kind wishes and advice on meds. It makes sense to me to gradually lower my doseage. I weaned myself off of Neurontin and it took about a month. I felt like I was losing my mind during that.

I am not getting the SCS from Hopkins. I did alot of research and spoke with many doctors. I just am not ready for that...plus both w/c and my private insurance will not approve it (and I don't happen to have $50,000.00 just lying around)! SO, that kinda helped my make my decision!

How did your Ketamine treatments work for you? Did you have bad side-effects. For me, it felt like I had the flu. I always feel crappy for a day or two after any injection. I did notice that my legs were very heavy and wobbly. I had some crazy (not scary) dreams the first night too. I've noticed that each injection hurts more than the last. My doc sprays this really painfully cold stuff right before the injection, then I feel pressure from the meds. Maybe I am just tensing up more than I should (I am terrified of needles and have had bad experiences with epidurals). Its over within 3 minutes. He said that its because of the increase of bloodflow, which makes sense to me. I get another injection in two weeks.

I am curious to your experiences.

Thanks Sandy!

Kim

Dear Kim,

I get 150 mg at a time in a slow running infusion (through a vein in my hand on my unaffected side) that has other meds in it too - including clonodine, versed, and others. I take anti-naussea meds and headache meds before I go. The infusion takes about 4 hours to run, I sleep through most of it. I am switching docs, WC approved the procedures for me in RI Court a week and a half ago and a RI doc has just started to do them. He got the protocol, including all the add-ins, from my first doc in NJ - Getson - and has agreed to do them for me the same way. I start with him this coming friday. I've had 20 infusions with Getson, between the 19th of April and 11th of June. It was rough because I had to travel several hundred miles between RI and South Jersey every week to get them. My parents took care of me while I was in Jersey, hauling me back and forth to Getson's and the airport. They also guaranteed my account for me while I got the infusions, because they weren't approved by WC until just recently and United Healthcare reimb rate was horrific (much less than they agreed upon in writing, despite numerous phone calls).

I think the ONLY reason I was approved by WC court for the infusions (and the approval was open-ended) was because I became well enough from the infusions to say that I was imminently returning to my job, which I did a week ago full time. If I go back out on disability I wouldn't be surprised if WC challenges my right to receive them.

I will find out after Friday's infusion how much of my crappy body feelings were from the withdrawals from the Fentanyl during May and June and how much were from the ketamine infusions. The doc that is taking over measures brain wave activity during the infusion and claims that he can tell when the ketamine is having an impact. He also has asserted that my rate of 150 mg is really low (Getson said that too). By then it will have a little over 3 weeks since my last infusion, which is the longest I have gone without an infusion since I started. We are in a high pressure system these days, even though its hot out, and I don't feel all that bad at the moment.

Most definitely there has been an improvement for me from the ketamine, but I'm not perfect. The muscles in my right shoulder (site of original injury and surgeries), neck and head are REALLY tight, even though I do stretches all the time. I still take some Fiorcet almost daily to ward off headaches. At night I use muscle relaxers and Ambien CR to sleep, but still wake up early most mornings (that didn't happen when I was on the Fentanyl!). My PT set off a horrible, scary flare a month ago in my occipital area by pulling on my head when trying to stretch out my shoulder, which took several days to go away. SOOOO...it's good, but NOT great... I still have to work really hard at being better and keeping a good attitude and trying not to be afraid all the time that I'm going to get a monstrous headache at any minute. Like everyone else here, I'll always have RSD and have some pain and all the issues that go along with it.

The best of luck to you.... Peace and love, Sandy

Kim,
that is great news! Enjoy while you can, you never know this could be the one that puts you into remission, at least for a while.
It's so nice to hear of success stories, we need more. Keep us upto date with how you are feeling.
Your friend Wendy